It has been a while since my last post. We have been quite busy. Going back and forth to Baltimore for 5 weeks and then trying to get into a routine with the kids and work. Shane has been doing amazing! He started with Pazopanib on March 15 and as of May 5 there is a 12% decrease in tumor size. We are beyond thrilled! The side effects tolerable. Mostly stomach issues and Shane is going grey early. But beyond that, there is no significant side effects. We couldn't be happier with the results. After all the ups and downs of the past two plus years we have something to hold on to.
The kids have been wonderful as well. They know what is going on with Shane, how much they understand is another story. But they have been incredibly brave and loving.
Our generous friends who have donated money and thrown parties to raise money, we are humbled by your love and your generosity. The total amount of $750.00 that was given to us we could not keep. We decided to donate the money to Shane's oncologist, who is raising money himself for a research tool in the fight for Medullary Thyroid Carcinoma.
This fight of ours will never go away yet, we believe that good news will keep coming.
Thank you again for all the love and support
Friday, May 27, 2011
Thursday, March 10, 2011
Where to begin... when I last wrote, everything seemed to be going according to plan. We were waiting for Shane to start the clinical trial, mentally preparing ourselves for the next phase of our journey. We were set to begin on a Tuesday, just waiting for the final approvals. Shane received a phone call on the Thursday night before from the oncologist letting him know that he did not meet the requirements for the clinical trial. Shane broke his leg 13 yrs ago and he has a wound there from his compound fracture. The drug company was afraid that the "surgical wound " may open up as a side effect of the drug so therefore he was deemed ineligible. We were shocked to say the least. For two years all we have been told was to get into this clinical trial and then for it to be yanked away at the last minute was a big blow! We tried challenging the decision to no avail. To me it was such a slap in the face. So now we were back to square one yet again.
We went back to Baltimore to meet with the oncologist to discuss other treatment options for Shane. There were a few that were presented and one trial that just opened up at Hopkins. This drug trial is in Phase II and is called Pazopanib. It is similar to the other drug in that it is supposed to shrink existing tumors and hopefully keep any growth from happening. What is great about this drug study is that there is no placebo involvement. Shane is guaranteed to get a drug! There are some nasty side effects and we of course will deal with them in stride.
We will begin next week, which means going to Baltimore weekly for a month and then once a month after that. In 2-3 months we should know if the drug is working or not. We will be talking to the kids about this soon and hope they have some understanding of how brave their Daddy is and how hard he is fighting.
I also must say how lucky we are to have the most amazing and loving friends and family. Thank you for your never ending support!
We went back to Baltimore to meet with the oncologist to discuss other treatment options for Shane. There were a few that were presented and one trial that just opened up at Hopkins. This drug trial is in Phase II and is called Pazopanib. It is similar to the other drug in that it is supposed to shrink existing tumors and hopefully keep any growth from happening. What is great about this drug study is that there is no placebo involvement. Shane is guaranteed to get a drug! There are some nasty side effects and we of course will deal with them in stride.
We will begin next week, which means going to Baltimore weekly for a month and then once a month after that. In 2-3 months we should know if the drug is working or not. We will be talking to the kids about this soon and hope they have some understanding of how brave their Daddy is and how hard he is fighting.
I also must say how lucky we are to have the most amazing and loving friends and family. Thank you for your never ending support!
Sunday, January 30, 2011
news
It has been a very long time since I have blogged. Probably since Dani's surgery. It was actually a good thing, no news is good news. Shane and I had gone down to Hopkins in August and he had scans done and at that time there were no signs of tumor growth. Shane insisted that the scans were wrong because he was feeling tumors in his neck, but you can't argue with what's not there. Anyway, we were told to come back in 6 months and go through everything again. During the first 3 months Shane was feeling great. He was going to the gym, he lost 20 lbs, really in a good place. These last few months however, Shane was feeling a bit more fatigued and had been complaining of more soreness in his left shoulder and he could tell that the tumors in his neck were growing. His stomach has also been not so good, which is a side effect of the disease.
As the appointment got closer we were getting more and more anxious. We both had a feeling that we weren't going to be hearing anything good. We went down last Tuesday. Shane went through all of the blood work and scans that are necessary for the clinical drug trial. At this time, the oncologist now has a say as to who gets into the trial or not. So Shane will be starting the clinical drug trial we have been waiting to go on for the last 2 years. This is great news. We are finally going to be doing something.
Here is the bad news, the results from Shane's scans show a tremendous amount of growth. There is regrowth in his neck, growth in his mediastinum, armpits, a tumor adjacent to his aorta and now it has metastasized to his liver. They also noticed a spot on his femur bone, which may or may not be benign. This news has been a huge shock to us. I feel like we are learning he has cancer all over again.
This is a lot to take in, we are trying to absorb all of this information and how this is going to effect our family. We now have to hope that when Shane starts this drug trial in 2 - 4 weeks, that he does get the drug and not the placebo. However, with any drug protocol there are side effects that we must be vigilant about.
The last 5 days have been very emotional for us. I know the upcoming weeks and months are not going to be easy either, but we are a strong and whatever comes our way we will fight it together! We are so lucky to have such amazing family and friends, You have been a tremendous source of strength to us and we thank you. FMC!!!!
As the appointment got closer we were getting more and more anxious. We both had a feeling that we weren't going to be hearing anything good. We went down last Tuesday. Shane went through all of the blood work and scans that are necessary for the clinical drug trial. At this time, the oncologist now has a say as to who gets into the trial or not. So Shane will be starting the clinical drug trial we have been waiting to go on for the last 2 years. This is great news. We are finally going to be doing something.
Here is the bad news, the results from Shane's scans show a tremendous amount of growth. There is regrowth in his neck, growth in his mediastinum, armpits, a tumor adjacent to his aorta and now it has metastasized to his liver. They also noticed a spot on his femur bone, which may or may not be benign. This news has been a huge shock to us. I feel like we are learning he has cancer all over again.
This is a lot to take in, we are trying to absorb all of this information and how this is going to effect our family. We now have to hope that when Shane starts this drug trial in 2 - 4 weeks, that he does get the drug and not the placebo. However, with any drug protocol there are side effects that we must be vigilant about.
The last 5 days have been very emotional for us. I know the upcoming weeks and months are not going to be easy either, but we are a strong and whatever comes our way we will fight it together! We are so lucky to have such amazing family and friends, You have been a tremendous source of strength to us and we thank you. FMC!!!!
Friday, May 28, 2010
Where to begin... Dani had her Thyroidectamy on May 17th. I was preparing myself for a combative patient. For those of you who know Dani, she can be moody and shy. Well my daughter was amazing! She blew me away! When we had to go back to prep her with "giggle juice" she was calm and chatty. Thankfully she was not picking up our nervous energy. The surgery went extremely well and Dani woke up with no problems from the anesthesia asking for her beloved hippos. We knew she was OK!
Dani was sent right to the PI CU for precautionary measures to monitor her calcium levels which can be affected during surgery. Again, Dani was amazing! She was a model patient, never complaining and obliging the nurses and doctors who came in and out of the room frequently through out our stay. Although we got very little sleep,
Dani's spirits were good and she even got a surprise visit from her favorite Disney Princess, Jasmine!
Our hospital stay was short and we happily came home that Wednesday. Dani has bounced back beautifully and is healing appropriately. Shane and I are just so relieved that this is over and that she is fine and more importantly that her thyroid was clean!
In regards to Shane, we found out right before Dani's surgery that he did not qualify for the clinical drug trial. What was explained to me by the oncologist is that, the drug co feels that Shane's disease is progressing at a 7% rate while the oncologist feels that it is progressing at a 26% rate. Obviously that is a huge discrepancy! While the news was disturbing, I had to put it aside until Dani's surgery was done and she was feeling better. In the mean time, Shane discovered another lump. He immediately went into action and went to have scans done here at Abington. What we know is that he is having more growth. There are no new spots, but the tumors that he does have are still growing. Shane contacted the oncologist and he needs to review these new scans. Dr Ball feels that he still will not qualify for the study we all want him on, but there is an alternative that we had discussed while at Hopkins. We just have to wait to hear back from the doctor. We did ask the Dr. why there was such a big discrepancy between his findings and the drug company's and this is how he explained it. The drug co. picks any 5 tumors in the patient and they can be big or small and that is what they base their answers on. The Dr, picked the 5 biggest tumors and that is what he based his facts on. He said he cannot predict which tumors the drug co will use. I do understand their methods, however I do not agree with them! So again, we wait. At least, Dani and Ethan are healthy and happy and no worse for the ware. For Shane and me its another bump in the road and together we will get through it.
Dani was sent right to the PI CU for precautionary measures to monitor her calcium levels which can be affected during surgery. Again, Dani was amazing! She was a model patient, never complaining and obliging the nurses and doctors who came in and out of the room frequently through out our stay. Although we got very little sleep,
Dani's spirits were good and she even got a surprise visit from her favorite Disney Princess, Jasmine!
Our hospital stay was short and we happily came home that Wednesday. Dani has bounced back beautifully and is healing appropriately. Shane and I are just so relieved that this is over and that she is fine and more importantly that her thyroid was clean!
In regards to Shane, we found out right before Dani's surgery that he did not qualify for the clinical drug trial. What was explained to me by the oncologist is that, the drug co feels that Shane's disease is progressing at a 7% rate while the oncologist feels that it is progressing at a 26% rate. Obviously that is a huge discrepancy! While the news was disturbing, I had to put it aside until Dani's surgery was done and she was feeling better. In the mean time, Shane discovered another lump. He immediately went into action and went to have scans done here at Abington. What we know is that he is having more growth. There are no new spots, but the tumors that he does have are still growing. Shane contacted the oncologist and he needs to review these new scans. Dr Ball feels that he still will not qualify for the study we all want him on, but there is an alternative that we had discussed while at Hopkins. We just have to wait to hear back from the doctor. We did ask the Dr. why there was such a big discrepancy between his findings and the drug company's and this is how he explained it. The drug co. picks any 5 tumors in the patient and they can be big or small and that is what they base their answers on. The Dr, picked the 5 biggest tumors and that is what he based his facts on. He said he cannot predict which tumors the drug co will use. I do understand their methods, however I do not agree with them! So again, we wait. At least, Dani and Ethan are healthy and happy and no worse for the ware. For Shane and me its another bump in the road and together we will get through it.
Sunday, May 16, 2010
In two days, Dani will be having her thyroidectamy.
We have to be at CHOP by 11:15, which means that surgery probably won"t begin until 1ish. It is looking like a very long day! She still doesn't know as of yet. We don't want to give her anymore anxiety than we have to. We will tell her tomorrow, and I am hoping that Ethan will be a big comfort to her since he has already been through this himself. I am extremely nervous for this week. Dani has been very clingy to me lately and I know that she will be even more so while in the hospital. But hopefully, everything will go as smoothly as it did with Ethan and she will be home by Wed night.
As far as Shane goes, we went to Hopkins a couple of weeks ago to complete a battery of tests and scans for qualification purposes for the clinical drug trial. Shane's oncologist seemed optimistic that he would qualify for the study. but we would have to wait and get the final word from the drug company as they have to review all of the data. On Thursday, I received a call from the Dr, telling us that the drug co. denied Shane. To qualify, the patient must have at least a 20% growth within a 13 month period. Shane's oncologist feels that he has a 26% growth and the drug co. feels that he has a 7% growth. Obviously there is a huge discrepancy! The Dr. wants to discuss other options, while I want to challenge the drug co. findings. However, this will have to wait a couple of weeks while Dani is taken care of.
As soon as we have info on Dani, I will blog more. Thank you all for your kind words and well wishes!
As far as Shane goes, we went to Hopkins a couple of weeks ago to complete a battery of tests and scans for qualification purposes for the clinical drug trial. Shane's oncologist seemed optimistic that he would qualify for the study. but we would have to wait and get the final word from the drug company as they have to review all of the data. On Thursday, I received a call from the Dr, telling us that the drug co. denied Shane. To qualify, the patient must have at least a 20% growth within a 13 month period. Shane's oncologist feels that he has a 26% growth and the drug co. feels that he has a 7% growth. Obviously there is a huge discrepancy! The Dr. wants to discuss other options, while I want to challenge the drug co. findings. However, this will have to wait a couple of weeks while Dani is taken care of.
As soon as we have info on Dani, I will blog more. Thank you all for your kind words and well wishes!
Sunday, March 21, 2010
Yesterday we went to Johns Hopkins.
This was a long time coming! We were both feeling anxious as the appointment approached. We prepared a list of questions for the doctor so there would be no misunderstandings and no repeats of what we went through at Penn.
Our appt was at 10:30. He was an hour late. As soon as he met with us he addressed his tardiness and apologized! ( Bonus point 1) Dr. Ball reviewed Shane's lab work he had done and the ct scans that I sent down to him. He even pulled them up on his computer to show us the tumors to which he was referring to (Bonus point 2).
So, what we know is that Shane is having growth. He is moderately progressing in his cancer. Dr. Ball believes that he will qualify for a drug trial. There were 2 trials that we discussed. The first being the xl- 184 that the Penn Dr had been talking to us about. And another drug trial called E707?. After discussing the side effects and the pros and cons and the Diabetes factor we think that the xl-184 is the better choice to start with. Dr. Ball wanted Shane to get another ct of his chest to see if there was any growth since his last scan in Dec.
Dr. Ball answered all our questions and we discussed all our concerns. And I feel he is genuinely there for the patient (Bonus point 3). I feel that he is very intelligent, direct and really willing to help Shane in this fight! (Bonus point-5-9).
So Shane went for his ct and are to call the dr next week to determine if he really meets the eligibility requirements. On our way home, we received a phone call, Dr Ball, he had the results from the scans. He wanted to let us know that there was no growth from Dec but needed a radiologist to review it. He also gave me the number of the study nurse so I could get the ball rolling if Shane should qualify for the clinical trial. Amazing Communication (Bonus point 10).
This experience is like night and day compared to Penn. Yes, Baltimore is not around the corner, but we will make it work. I feel so much better knowing that Shane is going to be getting the best care! We deserve the chance to fight this disease, and now I know we are with the right Dr.
Our appt was at 10:30. He was an hour late. As soon as he met with us he addressed his tardiness and apologized! ( Bonus point 1) Dr. Ball reviewed Shane's lab work he had done and the ct scans that I sent down to him. He even pulled them up on his computer to show us the tumors to which he was referring to (Bonus point 2).
So, what we know is that Shane is having growth. He is moderately progressing in his cancer. Dr. Ball believes that he will qualify for a drug trial. There were 2 trials that we discussed. The first being the xl- 184 that the Penn Dr had been talking to us about. And another drug trial called E707?. After discussing the side effects and the pros and cons and the Diabetes factor we think that the xl-184 is the better choice to start with. Dr. Ball wanted Shane to get another ct of his chest to see if there was any growth since his last scan in Dec.
Dr. Ball answered all our questions and we discussed all our concerns. And I feel he is genuinely there for the patient (Bonus point 3). I feel that he is very intelligent, direct and really willing to help Shane in this fight! (Bonus point-5-9).
So Shane went for his ct and are to call the dr next week to determine if he really meets the eligibility requirements. On our way home, we received a phone call, Dr Ball, he had the results from the scans. He wanted to let us know that there was no growth from Dec but needed a radiologist to review it. He also gave me the number of the study nurse so I could get the ball rolling if Shane should qualify for the clinical trial. Amazing Communication (Bonus point 10).
This experience is like night and day compared to Penn. Yes, Baltimore is not around the corner, but we will make it work. I feel so much better knowing that Shane is going to be getting the best care! We deserve the chance to fight this disease, and now I know we are with the right Dr.
Thursday, January 28, 2010
Its been a long few weeks!
As you know, we went to see Shane's oncologist at the beginning of the month. At that time, Shane had completed his scans and gotten preliminary results back from his GP. When we went to see the oncologist, she had not read his scans. We were told that she was going to review his scans and submit them to the drug company that conducts the clinical trial. I was to call her the following Friday and find out what the next step was. Also at the appointment, Shane had blood work done to follow up on his thyroid levels and measure the calcitonin in his blood, this is the marker for his cancer.
Right on time, I called the doctor's office and left a message with her secretary relaying the information the doctor had told me to say. A few hours passed and no phone call back, as 5:00 approached on Friday, I called again. The secretary told me that she emailed the doctor all of her messages and that she would get back to me.
That was our last contact with Shane's oncologist. I guess I should say her office. It is unfathomable to me that a Dr, an oncologist no less, has so little respect for a patient and his life. Granted Shane's cancer is slow growing, and we are so very grateful for that, but it is still growing. We are living with this every single day for the rest of our lives, it is not going away. I wanted to continue to call her, but Shane said no, he had completely lost faith in her. Not only because of this but because of past situations as well. We trusted her with his life and she can't bother to call us back...
So needless to say these last few weeks have been very difficult for us! I felt like we were in limbo. What were we going to do, the doctor we had was not calling us back and now we need to find another doctor. We immediately thought of the doctor we had me at Johns Hopkins. I called his office and his assistant said that Thursdays were his call days and if we didn't hear form him on the first Thurs, then he would call us on the next Thurs. Ofcourse he didn't call us that first week, it was torturous! The not knowing anything was really getting to me. The following week, I called his assistant again giving her a nice little nudge. Thursday came and went without a phone call. By this time I was starting to lose faith, but my husband, got on the phone and called the assistant himself and and told her that he needed this Dr to call him because his life depended on it. So, at 4:45 on Fri afternoon, we received a phone call from the Johns Hopkins Dr. He is willing to take Shane on as a patient! He is also running the clinical trial that the other Dr had at Penn as well as a different trial he is working on. This new Dr happens to be one of the best when it comes to Thyroid Cancers, so I feel very comfortable that we are moving in a positive direction. It is just a shame that we had to endure what was dished out at us through Penn. But now onto greener pastures. We have an appointment in the middle of March and we will take it from there.
As for the kids, today we went to CHOP. They both met with the endocrinologist and Dani had her follow up with the ent. Ethan's thyroid level is a little high, so he needs a med adjustment, otherwise he is doing great! He didn't even cry during blood work, so proud. Dani had blood work today to measure any calcitonin level, which we do not believe there will be. We have scheduled an ultrasound in April and her surgery is scheduled for May 17th.
It has been a very long, emotionally charged month for us. Hopefully now we can relax a bit before we go to Baltimore and then head into the spring for Dani's surgery. Thank you all for your support!
Right on time, I called the doctor's office and left a message with her secretary relaying the information the doctor had told me to say. A few hours passed and no phone call back, as 5:00 approached on Friday, I called again. The secretary told me that she emailed the doctor all of her messages and that she would get back to me.
That was our last contact with Shane's oncologist. I guess I should say her office. It is unfathomable to me that a Dr, an oncologist no less, has so little respect for a patient and his life. Granted Shane's cancer is slow growing, and we are so very grateful for that, but it is still growing. We are living with this every single day for the rest of our lives, it is not going away. I wanted to continue to call her, but Shane said no, he had completely lost faith in her. Not only because of this but because of past situations as well. We trusted her with his life and she can't bother to call us back...
So needless to say these last few weeks have been very difficult for us! I felt like we were in limbo. What were we going to do, the doctor we had was not calling us back and now we need to find another doctor. We immediately thought of the doctor we had me at Johns Hopkins. I called his office and his assistant said that Thursdays were his call days and if we didn't hear form him on the first Thurs, then he would call us on the next Thurs. Ofcourse he didn't call us that first week, it was torturous! The not knowing anything was really getting to me. The following week, I called his assistant again giving her a nice little nudge. Thursday came and went without a phone call. By this time I was starting to lose faith, but my husband, got on the phone and called the assistant himself and and told her that he needed this Dr to call him because his life depended on it. So, at 4:45 on Fri afternoon, we received a phone call from the Johns Hopkins Dr. He is willing to take Shane on as a patient! He is also running the clinical trial that the other Dr had at Penn as well as a different trial he is working on. This new Dr happens to be one of the best when it comes to Thyroid Cancers, so I feel very comfortable that we are moving in a positive direction. It is just a shame that we had to endure what was dished out at us through Penn. But now onto greener pastures. We have an appointment in the middle of March and we will take it from there.
As for the kids, today we went to CHOP. They both met with the endocrinologist and Dani had her follow up with the ent. Ethan's thyroid level is a little high, so he needs a med adjustment, otherwise he is doing great! He didn't even cry during blood work, so proud. Dani had blood work today to measure any calcitonin level, which we do not believe there will be. We have scheduled an ultrasound in April and her surgery is scheduled for May 17th.
It has been a very long, emotionally charged month for us. Hopefully now we can relax a bit before we go to Baltimore and then head into the spring for Dani's surgery. Thank you all for your support!
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